Weekly roundup

I get the feeling that someone ‘up there’ doesn’t like me. I know people who sail through life, whereas if something can go wrong in mine it will. I am due to see Dr Sargur at Sheffield on 27th June. He is one of only a handful of NHS Consultants in the country now treating MCAS patients and has a good reputation on forums. The appointment is for 11am and it’s a 3 hour train journey, so I decided to go the day before and have booked a hotel room and my return train tickets. Then this week, I receive a letter saying that “now the consultant has seen your GP’s letter he has decided it’s an inappropriate referral and has cancelled your appointment”. WTF?! I sat on the stairs and cried. I have had no treatment or advice on my MCAS since I was diagnosed 6 years ago and am currently having some symptoms which are worrying me (I still have the swellings under my armpit and in my elbow). I’ve also lost £100 on my hotel room (a huge amount of money to me) as it was non-refundable and have no clue if I’ll get a refund on my train fare. I now need to speak to my GP as to where I go from here, but in the meantime I’m going to write to the Consultant and explain my situation. I thought we had a legal right to be treated by any hospital and consultant we choose, particularly when there are zero specialists locally. People who live in rural areas are completely discriminated against when it comes to health-care and it is not on.

I have had to fight for every ounce of care I’ve ever received and I am exhausted. More than that, I feel beaten. On top of the18 months I’ve just spent fighting for help for my Dad and getting nowhere I just don’t know if I have any fight left in me to tackle the situation.

I was supposed to hear from D&G about my fridge/freezer insurance complaint by last Friday but of course have heard diddly squat. They will be deliberately taking their time in the hopes I will cave and buy a new fridge so they won’t have to fork out for one. The fuckers! I’m giving them 5 more days to replace my appliance then am opening a complaint with the Ombudsman, and will also be writing to the FCA and informing them of the tactics used.

It was my Mum’s 79th birthday this week. She had her ears pierced 30 years ago but for some reason along the way had stopped wearing earings and the holes had closed up, so she asked for them to be re-done for her present. My folks, Bertie and I went out for lunch and actually all really enjoyed it which makes a change – the fact my Mum decided not to drink probably had something to do with it.

On Friday I went to my elderly friends’ house to fill in forms for Attendance Allowance, which is a welfare benefit payable if you need help with daily living and are over 65. No-one tells you about your entitlement to AA and my friend had never heard of it despite being regularly seen by his GP, physios, OTs and the falls team. It’s a disgrace that elderly people aren’t told about the benefits they can claim, despite paying into them all their working lives. Even when you do know about it the 31 page form is so daunting it puts most people off and if I hadn’t have filled it in for him my friend would just have binned his application.

I’m mid-cycle and have spent the entire weekend with a migraine, which also makes me nauseous and generally bleugh. I seem to be getting them more than usual this year which I’m putting down to my fluctuating peri-menopausal hormones. Please God just make it stop. The weather is also atrocious for June – yesterday it was only 11C and it has rained most of the week. I am ready for summer, fed up of being stuck in the house and just wish the sun would put in an appearance.

Well, that was a totally whingy post wasn’t it?! I wish I had something positive to end on but I don’t 😉 This week has felt like an uphill struggle and after 25 years of uphill struggle I’m pretty much knackered. I did try hard to win the £120 million euro jackpot on Friday night but failed miserably. All I can do is trudge on and hope that this week is better.

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7 thoughts on “Weekly roundup”

The casual cruelty of health care never ceases to amaze. I am so very sorry that your opportunity to visit the MCAS specialist was denied and I wish they would then have to pay for your hotel! Over this past year my oldest son (28) had a heart infection that wasn’t diagnosed in time (apparently medicine takes the holidays off, too) and ended up having to have a double heart valve replacement two months after they found the infection. That’s a long enough story to be a book in and of itself, but several of his hospitalizations and his surgery were done in another city, and just the hotel costs for me to stay up there with him were about $1500. Of course that doesn’t count me dropping my life for three or four months, not being home for nearly six weeks straight, administering IV antibiotics to him twice a day for two months, etc. My ears are smoking on your behalf. It totally blows.

😮 to the cost of staying with your son while he was ill! As you say, I don’t think healthy people realize what’s involved when someone is ill for a prolonged period of time and that you basically have to drop your whole life. I do hope he’s now feeling much better x

Ah Jak that totally sucks. I’m really sorry to hear your appointment was cancelled. He could at least have listed the actual reasons why he didn’t think it was appropriate so you know how to follow up. I feel exhausted just reading this post and I get how tiring it is to always have to be fighting and advocating. Here’s hoping some sun will come out and you will a break.

Ive had three referrals to immunologists cancelled with no reason, its devastating & now I am ill again with new symptoms of burning in my leg veins & old symptom of severe fatigue – like you I have lost all faith in the NHS, I have given up ever being given a diagnosis after more than a decade of struggling. Now I see from you that a diagnosis is completely useless anyway, because even when you have one you are given no treatment & no help. I dont know how you carry on battling, It not a whinge its a much needed vent, and you are entitled to vent all you like. Hugs

I’m sorry to hear how shit it’s been for you. Everything seems to be a fight doesn’t it. My GP surgery only prescribed me 2/3 of my steroid dose, a number they had plucked out of thin air apparently. I even sent a complaint attached with my prescription request telling them my dosage. The hospital hadn’t written my dosage down so the prescription people at the Drs just guessed 🙄. I too came home and cried. I would have landed up in hospital
I’ve lost all my fight. I’ve shut the door on the world so I get how you feel
I then rang for my blood test results. The one I stated when I made the appointment. They missed it off so now I’m sitting at the hospital for nearly am hour waiting to get it done
Just a thought, contact PALS at the hospital and see if they can help re the appointment and also getting some money for the hotel
Sarah x

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Hi. Thanks for visiting my Blog. Posts are listed newest first, but if you’d like to start with my first rambling written in 2013 click here. I’m not a mast cell or EDS expert and have no medical training. I’m just sharing my own personal thoughts and journey. This isn’t a forum, more a diary, but polite, respectful comments & questions are welcome – click the ‘leave a reply’ link under post titles or scroll to the end of each post and use the comments box.

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